Pray for Tommy

Please join us Saturday July 9 for the Cure Search Walk!

2011-07-07T12:16:00.000-07:00

Please join Tommy and our family and friends Sat. July 9, 2011 for the annual Cure Search walk at Libery Park. www.curesearchwalk.org

Christmas Service Project!

2010-11-01T12:30:00.000-07:00

As many of you know my little man was diagnosed with Leukemia almost 2 years ago. He is doing very well now, and we are SO proud of him! For Christmas this year our family is doing a service project to give blankets, hats, new clean toys, play doh, stickers, movies, games, baby toys etc. to Primary Children's Oncology Clinic. They have been SO AMAZING to our little Tommy and so many other little kids battling for their lives. Each time we go to the hospital, which has been many more times than I care to go, they have always made each visit special with fun things for the kids to do. They are always in need of new things to keep these cute cancer cuties happy! If you are interested in donating please let me know. We could use all the help we can get. It is a great way to get your kids involved in service too, and what better time of year to do it? ***Please make sure everything is either unwrapped or sanitized to help keep these cute kids healthy :-) Thank you for all your support.

One year Anniversary!

2009-12-15T19:15:00.000-08:00

One year ago today I drove Tommy up to Primary Children's Hospital and recieved the horrible news that he had Leukemia. That was the worst day of my life! I can't believe it's been a whole year since that day, and I am so grateful we are already a year into his treatments. We have 2 more years to go, but it is amazing to look at Tommy and see how well he has done throughout this whole ordeal. I am so proud of Tommy for being so strong! What a champ! To look back at what he has gone through is tough, to see the pictures is a reminder of just how sick he was. It's sad how quick we are to forget how precious our little ones are, with how often they drive us nuts! I need to remember more often what he has gone through, he is one amazing little boy. Tommy keep fighting your fight, and you'll be a winner! We love you and are so proud of what you have accomplished in your short little life. I don't want to think of how our life would be without you. I have to thank my Father in Heaven for making Tommy healthy again, and for allowing us to be his parents. We are so blessed, and it is such a great time of year to remember all the things our Savior has done for us. Merry Christmas!!

Tommy's "Make-A-Wish" Trip

2009-11-02T22:02:00.000-08:00

We were so lucky to be able to go on Tommy's "Make-a-Wish" Trip to Disneyworld in October. It was so amazing, all provided by the Make-a-Wish foundation and Give Kids the World. We were treated so well from the time we met Mindy our "wish coordinator" to the time we got home. They really know how to spoil these little kids, and they all completely deserve it for what they've gone through. I have to thank you all for making Tommy's wish come true, he had SO much fun, and felt SO special.
When we got to the airport we met Roger, who was our greeter and brought us from the airport to the Give Kids the World Village where we stayed. The kids loved Roger!
The Give Kids the World Village is a charitable foundation, all donated to kids with life-threatening illnesses. Being there was very humbling and a reminder of everything our little Tommy and our family has been through in the last year. It is amazing how many sick kids there are in our world, it's so sad! Looking around there, being with all these families who have children who are so sick, we were SO grateful that Tommy is so healthy. We love you SO much Tommy! The place is amazing, each family gets their own little villa and each house is decorated differently. There is a ice-cream parlor where the kids were able to eat ice-cream anytime they wanted to for FREE, that was a dream come true! There was a magic castle where inside all of their dreams come true, a Merry-go-round that the kids could ride all by themselves whenever they wanted to. There was a salon for girls AND boys where the kids all got cool fake tatoos and face painting, and Brooklyn got a manicure. There is a theater, a mini golf course, a free arcade, the coolest model train set I've ever seen, a train that takes you around the village, a pool, a playground that is themed after the game Candyland, and many places to eat whenever you're hungry. So that alone kept us very busy!!
When we went to Disneyworld, Seaworld, and Universal Studios, it was SO crowded! I think mine and Tom's favorite part was the tag they gave us that got us to the front of the line on ALL the rides. That saved us many tears and melt-downs from the kids, and us. Tommy's favorite rides were the "Jaws' ride at Universal Studio's and one called "Everest" at Disney's Wild Animal Kingdom. I have to say "Everest" was SO scary, it even went backwards in the dark! Tommy LOVED every minute of it and rode it a few times, Brooklyn was bawling, and I thought I was going to go into labor!
The weather was ridiculously HOT for October, they said it was one of the hottest on record. It was mid 90's with humidity, so we would just sit there and sweat! One of the days we had to take a break from the theme parks and go to the beach. We drove a couple hours out to Cocoa Beach. It was beautiful, and a nice relaxing break. The kids had a blast in the warm water and the fresh air. Zac and Tommy could have played in the sand all day, and I think they did.
The trip was so fun and I can't ever thank Make-a-Wish enough for providing that for our little Tommy! Thank you!!

My little KINDERGARTENER!!

2009-09-03T18:58:00.001-07:00

Tommy started Kindergarten today, and it couldn't come soon enough... for him. He asked me all morning when he got to get on the bus, what is it about that bus? So I kept telling him in a couple hours, in a few minutes...then I finally got smart and stuck a watch on him. I said when the numbers say 12:00 it's time to go. Then he didn't bug me as much, just about every 5 minutes. He was so cute waiting for the bus with his buddy Parker, they were so excited. They were the first kids on the bus, and looked a little nervous about it, but we assured them it'd take them right to school. I didn't think I'd cry, because he was so ready to go, and I was so ready for him to go but I did anyway.
Tommy came home so happy, and loved every minute of his first day of Kindergarten. He got a "Ding-dong" from Mrs. Moon, and nothing could make Tommy happier. He told me all about the playground at recess and what he and the boys were doing, what could be better? What a great first day of school...Let's hope the next 9 months are just as great! We're so proud of you Tommy!

Relay for Life... "Team Jake"

2009-08-29T12:48:00.000-07:00

Our friends the Jamieson's who's little boy Jake also has Leukemia set up a fantastic Relay for Life at Riverton High. They did such a great job and went to so much work putting it all together for Jake. It was such a fun, and emotional night to see all these kids and adults who have had cancer, and still are fighting cancer. They had a lap for just the "Survivors", that was touching, that's where the emotions kicked in. Then they did a lap with the Survivors and their families, so we all walked together. Just thinking of what these little kids have been through in such a short time is heart-breaking, but they are so much stronger for doing it.
Here are some pictures from that night.

Join Team Tommy!

2009-07-03T09:34:00.001-07:00

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost. We have put together a team, "Team Tommy" to help raise money for the cause. We would love to have as much support as we can, and if you can't come walk please donate at the link below. All of the money goes to the Leukemia and Lymphoma Society. It will be a fun and very memorable night. Thank you!

Friday, October 2, 2009 Sugar House Park 2100 S. 1500 E. Salt Lake City, Utah
Walk Distance: 2 miles Check In: 5:00 pm Opening Ceremony 6:00 pm

"Welcome to our Team's Homepage"

MaINtEnAncE!!!!!

2009-06-26T13:06:00.000-07:00

We MaDe It! Tommy is now into where we've been trying to be for the last 6 months... Maintenance! What that means is we have made it through all the hardest phases, and he will be in the maintenance phase for the next 2 1/2 years. Tommy finished up the last phase, delayed intensification well. It was tough on his little body, but his counts were just high enough to move on. His ANC had to be above 750 and it came it at 800. We couldn't be happier. Tommy is really excited, we have talked about this so-called "maintenance" thing for a long time now, we're finally here and now he's just waiting for fireworks...don't worry buddy they're coming. While in this phase we can now travel, take his long-awaited Make-a-wish trip, he'll be able to start Kindergarten in the fall, his hair and his beautiful LONG eyelashes will grow back, and we can all go back to a semi-normal life. They expect his counts to stay between 750-1500, when he's healthy, and they adjust his medications to keep them there. So now instead of going up to the clinic once a week, we go once a month for chemo (Vincristine). Tommy was actually sad when I told him we didn't have to come back for a whole month, go figure? I don't know what we're going to do with ourselves..oh yeah, have a life!! He will still take a 6MP chemo pill everyday for the next 2 1/2 years, which isn't a battle anymore, he's an old pro at taking pills now. He'll also take steroids the first 5 days of the month, which he started again yesterday, I can't tell you how thrilled I am about that one..."Roid Rage" here we come! Then thursday's he'll take the methortexate chemo pill too. It still is quite a bit of medication, but they say the kids handle it well and feel much better with a lot less side-effects.
Dr. Barnette, Tommy's Oncologist asked me yesterday if Tommy was always so easy-going. I had to ask who he was talking about, then I had to laugh because Tommy has always been so strong-willed, and tough for me his entire life. Which I have to say in the last 6-8 months, for the most part he has gotten much easier to deal with. I don't know if that is with everything he has been through, or if he's just growing up a little. Dr. Barnette said he is one of their "Star Patients", everyone up there adores him and thinks he is so great. He is so proud and amazed at how well he has done through this whole process, and we are too. He has amazed me over and over again at how resiliant he can be and what a trooper he has been. There have been so many times when I am running or doing something hard, and I am so tired I want to quit, then I think of Tommy and everything he has been through and I know I can do it. Tom and I have talked about many times we want to quit because life is hard, and this or that sucks, then you think about our little Tommy who is battling this cancer with everything he's got. He is truely our HERO! What an inspiration, and to only be 5 years old. Imagine the story he's going to be able to tell when he's older.
These are pictures form his Preschool Graduation last week. It was a great program by Miss Marilyn at Corner Canyon Academy, we love her and her little preschool. They have done so much for our family and for little Tommy. She has cried so many times when I would go pick him up, she loves that little boy. I was so grateful for the times he was able to attend preschool this year, which weren't many. It was a heart-breaking performance, they sang the cutest songs and I think I cried the whole time. I couldn't help but think that we were so grateful that Tommy could be there to finish preschool. We are so proud of him. Thank you Grandma, Grandpa and Grandpa Lou for coming, it was great to have you there. And to my sweet parents, we missed you and know you would be there if you weren't a half a world away. Thailand is so lucky to have you!
I am amazed at the strength I have had to get through this ordeal, I am a very emotional person most of the time. At the beginning of all of this, back in december when Tommy was first diagnosed, I thought there was no way I would get through this. There were so many nights I would sit and cry and beg Father in Heaven to take this away from him. One night in particular I remember well, it was the night before we were going to be told the diagnosis. I knew deep down that he had Leukemia, but I so wanted it to be some random virus with the same symptoms. I layed there in the hospital by Tommy and prayed longer and harder than I have ever prayed in my life for this to not be Leukemia. The only people I had known who had leukemia was my Uncle, and my great-aunt, who both passed-away from it. So the little knowledge I had about this disease at the time wasn't good. As I laid there and prayed, I was in tears as I felt the comforting power of the Holy Ghost who told me everything was going to be ok. And from that moment on I knew Tommy was going to make it and he would be fine. I felt from then on my burden was taken from me, and that the Lord would carry it for me. I am so grateful for the Atonement, it gives us the strength to get through some of lives hardest trials because our Savior has chosen to bear our burdens for us, if we'll let him. This whole process has been an amazing test of our faith, and our strength as well. We have been through a lot in the last couple years both financially, in our own families, and with friends, but when the health of your child is at risk that is the most important thing. I pray that all the relationships we have and have had will one day be mended, we love our families and friends very much. May God continue to bless our little family and yours as well. Thank you for all you continued support and prayers. LIVESTRONG!

Almost there.....!

2009-06-04T16:40:00.000-07:00

This last couple of weeks have been really intense with Tommy's treatments, hence the name Delayed Intensification. Last week we started Thursday with a new regimen, new chemo pill that he takes for the consecutive 14 days, he was given a couple new IV chemo's as well. One is called Cytoxin, which takes about an hour to run through because it is so toxic, and the other is Ara-C which he got last Thursday and the following 3 days, through Sunday. We do the same thing starting today again too, and get chemo thru Sunday. The main side effect for these are nausea, hair loss (what hair?), and low blood counts. Today we went up for some more fun up at Primary's, and got some more chemo. Tommy had to get a blood transfusion again, his hematacrit was low. It is always scary to have to watch them do that, they warn you of course of all the side effects like an allergic reaction, fevers, fainting, nausea, difficulty breathing, paleness, chest pain, oozing at the site (mmmmm...). The nurses watch him very closely while you're there, doing vitals every 15 minutes, for the hour and a half. Then you have to watch him closely at home for the next 24-48 hours. That's when it scares me, when he's home and he has some wierd reaction. He'll be fine, right? So we ended up staying there today for 7 hours! We watched a few movies, ate some lunch, played video games, teased the nurses. And the funny thing, when it was time to go home, Tommy still wasn't ready. I think he should just move in up there, and we can visit. He is so happy there, probably because he gets whatever he wants, and gets to watch movies and play video games all day which he doesn't get to do at home. The nurses and doctors do love him though, how could you not. It was so cute after he got his blood, all the nurses were coming over to see him and saying how pink his cheeks were. I don't know if it was from the blood or if he was blushing, so cute.
He has had a good couple of weeks, only one sick day and lots of running around with buddies. The chemo's haven't bothered him too much yet, other than his low blood counts. I love talking to Dr. Barnette whenever we go in, he is so optomistic, he says he'll just fly through this. Usually he does, but this next couple weeks I'm a little more nervous about. The GREAT NEWS is.... We get 2 weeks off from clinic for him to recover and his counts then...Da da da da.... Off to MAINTENANCE!!!!! As long as his ANC is above 750 he can go into maintenance, and then life will get "SO MUCH EASIER", at least that is all we keep hearing. It better!!! We are ready to have a little more of a life. This has really tied us down a lot, not a lot of traveling, Tommy has missed out on a lot of opportunities, and we have to. It sure has been a blessing at the same time though, in all honesty. It has taught us a lot about what life is all about, not to waste it away. We have all tried to be a lot healthier, and to love those around us with all of our hearts. I hope we can remember this experience and grow from it, and to always remember what we have learned from it. That is the only way we will learn in this tough life, if we smile through our trials and learn from them. "Come what may and love it", right?
I am so proud of Tommy. My little 5 year old has taught me more than I ever thought a little boy could. He is so strong, and he never complains, his attitude is so great and he just never gives up. I won't ever let him forget that either, NEVER GIVE UP! After this experience that kid can get through anything. He is and always will be my HERO.
One more thought, we have started a team for the Light the Night Walk, it's called Team Tommy.
Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost. The date was changed to Friday Oct. 2 instead of Saturday because of General Conference. Join us, it will be a fun, and very meaningful night. If you can't attend, please donate to the cause. Thank you!
Here is the link:
http://pages.lightthenight.org/ut/saltlake09/TeamTommy

The New "Do"... Just in time for Summer!

2009-05-15T13:54:00.000-07:00

Tommy's hair has been falling out like crazy the last couple of days. He would wake up and there was hair all over his pillow and blankie, when we washed his hair half of it was gone when he got out of the shower. He had had it with hair all over him! So yesterday I called Tom and said you need to come home and shave Tommy's head, ASAP! I asked him if he wanted me to call all his cousins and friends over again, and he said no he didn't want everyone watching him this time. So it was just the family. It was quite emotional, I was surprised it was that hard the second time around. I think because you think of all that he has been through at such a young age, and what a trooper he has been the whole time. I am amazed at his attituda, besides being on the steriods the last couple weeks, he has been such a sweetheart and has grown-up a lot through this process. He looks so cute with his little bald head, I love to just sit and rub it it's so soft. I am looking forward to his hair growing back and to see what color and texture it will be next. It's a nice cut for summer, just have to lather on the old sunblock!

Update on Tommy

2009-05-12T14:31:00.000-07:00

Tommy has really slowed down again, his treatment is really taking a toll on his little body. The last week or so he hasn't wanted to do much but eat and sleep. You gotta love steroids! I have had it with these steroids, fighting with Tommy to take 4 pills in the morning and 3 1/2 at night, and him eating all day and all night is getting exhausting. I am trying to be so patient with his moodiness, and trying to remember it's not him it's the steroids talking, but it is worse than a girl. We can't let Zachy cry or be his normal loud self or Tommy screams at him, the steroids must make everything much louder than it really is. He gets headaches daily from the side-effects of them. The only thing Tommy wants right now is quesadillas, yesterday we ran out of tortillas, you would have thought it was the end of the world at our house. He was yelling at me to go to the store first thing in the morning to get more. He ended up going to his buddy Kolsyn's house and told Tifini he had to have a quesadilla...Thanks Tiff, you're a life-saver! So by the end of the day, he had had 6 quesadillas. He has put on some more weight, he looks cute and chubby. He doesn't like to tell me what he wants either, it's all a mind game...ahhhh! Sorry just had to vent. The last few days have put me over the top! Bless his heart, he is miserable I understand that. I am just really looking forward to Thursday when we are OFF these steroids again.
I love that little boy, it is so hard to see him suffering this way. The last week he's been really sick, achy, and tired. If we can just get through about the next 5 or 6 weeks we're in good shape, they'll be the toughest 6 weeks we've had so far. At least that is what the doctors, nurses and the Jamieson's tell us. We'll see, maybe it won't be as hard as they anticipate. But I am prepared ( I think) for the worst, just in case. As long as Tommy doesn't get any funky viruses or the swine flu, he should be alright.
Thank you all for your continued support. We love you and are so grateful to all our families and friends for being our rock through this trial. We are so fortunate to have the gospel and for all the blessings it brings into our lives. We thank our Father in Heaven everyday for our little Tommy. Please continue to pray for him.

Sand Dunes!

2009-05-12T14:12:00.000-07:00

Tommy is heading into a real tough part of his treatment, and we wanted to get away while we still could. So we took a quick weekend trip to the sand dunes, a little get away for Tommy and the rest of us of course. We haven't taken these kids anywhere for at least 6 months. He hasn't been feeling great, and may starting to go downhill again. He was really excited to go, and really tried to have fun. It was tough to watch because usually that is Tommy's favorite thing, to go ride his 4-wheeler especially at the sand dunes. He didn't have a lot of energy like he usually does, but he still had a great time. The kids favorite part is to play in the "big sand box" like Zac called it.

Spring Baseball

2009-05-12T14:06:00.000-07:00

Tommy is playing Spring Baseball, whenever he is up to it. This is the one game he has made it to so far, he had fun with his buddy Aiden. We hope he'll be able to play more games. Way to go Tommy!

Moving on...

2009-04-24T14:34:00.000-07:00

Yesterday Tommy started the phase that I have been anticipating since we started this whole thing..."Delayed Intensification". This is the phase that is supposed to be the hardest of the whole thing, we will see. We went to clinic yesterday and when we walked in they said they needed to do an ECG (echocardiogram-an ultrasound of his heart), I about died. So we went down and looked at his heart, and everything looks great, thank goodness! This new chemo called Doxorubicin he started yesteday has a major side effect, it can cause damage to the left ventricle of the heart-that's comforting. It just keeps getting better and better. So I guess through this phase and for the remaining 2 1/2 years of his treatment, and then each year after they will continue to do the ECG to monitor his heart closely. Tommy thought that was really cool to see his own heart. I'm so grateful they are aware of these things, and they are on top of it, GREAT DOCTORS!!
We went back upstairs and started the clinic process, getting weighed, Tommy is losing a little weight, measuring him, he is getting taller however FINALLY! They take his blood pressure, temperature, and we wait some more. This clinic up at Primary's is fantastic, however it is just like a doctors office, a lot of waiting. I am a little frustrated this week only because what usually takes us about 3 hours MAX took us today 5 1/2 hours. The nurses up there are the best! I haven't had a complaint about one of them until today, and she was SLOW. Bless her heart, very nice, but must have thought we had nothing better to do with our day. My poor neighbor had my kids all day, thank you Alisa, you are a life saver!!
Thank you again Kirsten Zundel and your cute girls for the "chemo days" toys or we would have been nuts. Tommy sat there and played with the "Flarp" goo for hours, laughing and blaming everyone that was in the room for "tooting". Tommy had all the nurses and Dr. Barnette laughing, that is why he loves this place so much. He loves the attention, and everyone up there loves Tommy, how could you not? He is always surprising Dr. Barnette. He walked in today and shot a plane at him from his plane-gun. Barnette is so great, he and Tommy are buds.
Dr. Barnette gave us a rundown of what to expect from this phase for the next 2 months. He started him on steroids again, we are really looking forward to the "roid-rage" returning and the constant eating too. Luckily he is only on them for 2 weeks, so hopefully he won't balloon like he did last time. He also has to take a whole bunch of new drugs that all have fun side effects as well. He also has an ear-infection so he is on 2 antibiotics. POOR KID! He gets so sick of taking medicine.
Tommy had another back-poke yesterday to keep the leukemia out of his spine and central nervous system. He will continue to get those once a month throughout the whole treatment. We are always so grateful when the test comes back negative. He gets them now in the upstairs "sedation suite", so Tom and I get to watch the procedure. It is interesting how they do it. They give Tommy these drugs that make him really loopy, it's funny! He is awake, but just really out of it. He looks at us and so enthusiastically says "Wow you have 4 eyes" or "You have 3 heads, and 2 noses." It's really hard not to laugh. We ask him about his girlfriends and who he kisses, it's the only time to get it out of him. I need this drug when he's a teenager! Then we have to stay in the room until he recovers, which usually takes about an hour.
Then off to the "Infusion Suite", I love how they make it sound so inviting, it's really just where the kids get blood and chemo. So they gave him his new chemo, the doxorubicin which is a red chemo. As it was going in, I thought it was blood so I ran to go get a nurse they warned me it was the chemo and not his blood. Thank goodness! So far our day at the clinic has been very out of the ordinary. After the doxorubicin they gave him his usually vincristine chemo push and we were on our way home, finally!
Tommy is my HERO! I love that little boy with all of my heart. We have grown so much closer through this whole experience so far, and our family as well. It has definitely been a blessing in disguise. I know it sounds so crazy to think of cancer as a blessing. We have some friends who have a little boy who is going through this as well, they told us the same thing when Tommy was first diagnosed and I thought they were crazy. As much as I hate it, there are so many things it lets you realize about the people you love and about life. I have learned a much greater appreciation for my kids and my loved ones. Life is so fragile, love your loved ones!! I don't know why Tommy was chosen to have to endure this, but I truly believe it was to make us stronger, and make our families closer, and I continue to pray that it does. Thank you Tommy for being the one who was strong enough to endure this trial, you amaze me everyday little boy. Tommy was born my toughest, and I am now constantly grateful that he was. I hope you remember some of this when you get older. I know this trial will make you even tougher (which is hard to imagine), and I hope that it teaches you empathy, patience and determination. I hope you learn that nothing can stop you, especially not cancer! We love you Tommy and pray for you continually. I know the next couple months will be tough, but keep that "Eye of the Tiger" and you will get throught this just fine.
We thank you all for your continued support and your prayers.

Tommy's new daily regimen...Looks fun huh?

"We will ROCK you Cancer!"

2009-04-09T15:54:00.000-07:00

This is Tommy's Newest saying, "We will rock you cancer!" since his favorite song is, "We will Rock you".
So today Tommy was given his last dose of Methotrexate chemo, it was 300ml (per whatever). That is the highest dose they give to these kids, and they never had to back off. Usually they will have to hold off giving the chemo due to low blood counts. He has been so strong through the past few months, we are SO PROUD of him! He has SURVIVOR written all over him. He will be off for two whole weeks, hopefully, as long as his fevers stay away. I think it's time for VACATION, I wish! Dr. Barnette is so proud of him too, they say he is beating the odds.
I thank you all for your constant prayers for my little boy. Prayers are what is making him strong and getting him through all of this. I have developed a huge testimony of faith through this experience. I thank my wonderful parents for serving a mission way over in Thailand, I know they are praying hard for our little Tommy and their prayers are being answered because of their sacrifice in serving the Lord. I have to thank my AMAZING sisters (Holly, Wend, and Steph) and my husband's wonderful parents, you are ALL life-savers! I haven't even had to ask for help, they have been there all along offering, and forcing me to let them help. I love you sissies. Thank you all for your constant thoughts and continued generosity. Thank you all for sacrificing your time to help our family out, be it watching our kids while we go to the hospital, or plowing our driveway, meals, your notes of upliftment (those have helped SO much), and just your friendship. It means the world to us, thank you ALL! We love you and hope someday we will be able to return the favor, but hopefully in a better situation.
I know we are only a few months into this thing, but I feel so strongly that he will continue to do well, and beat this cancer! I'm sure there will be bumps anlong the road, but if we can make it into "maintenance" I think things will be much easier. So in two weeks, we will go back, have another back-poke and if his ANC is above 750 he will move onto what is called "Delayed Intesification". This is supposed to be the hardest of all the phases in this treatment. He will get like 5 new drugs, plus he goes back on steroids for a couple weeks, hence the "intensification". We are really looking forward to the "Roid Rage" again, hopefully the side effects won't be quite as bad, Tommy has finally lost his 12 pounds from the last round of steroids. This phase will last another 2 months, then off to "Maintenance"!!! I can't believe we are almost there. The Maintenance phase is where everyone aspires to be until they are through with treatment. He will be in maintenance for the remaining 3 years, which means then we only go to the clinic once a month, instead of weekly. Life is "supposed" to (huh Heidi?) get a lot easier, with Tommy feeling better, looking better, his blood counts should go up, and he will be able to go back to a more-normal 5 year old kids life. We found out today that he will be able to play soccer in the fall, Tommy was so worried he wouldn't be able to. Of course depending on his counts, how long will we be saying that? Anyway, that is the latest. Hopefully the news will continue to be good news. I appreciate you all caring so much about our little guy. Pretty soon you will see him running around with the rest of the boys, if this weather would ever warm-up huh? GOOD LUCK TOMMY!!!! We are all cheerin' for you! "We will rock you Cancer!"
One more thought, I have started a team for the Leukemia and Lymphoma Society fundraiser, it's "Team Tommy". If you would like to join our "Light the Night Walk" to raise money for this cause, here is our team web-page. www./pages.lightthenight.org/ut/saltlake09/hhasleton It will be October 3, 2009 . It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost. I think it will be a lot of fun, and definately for a GREAT cause. If you are unable to attend, there is a way to donate to the Leukemia Society on there also. None of the money will go to us, it will all be donated to the Lekemia and Lymphoma Society. Let me know if you are able to join us.

Another Trip to the ER!

2009-03-22T13:33:00.001-07:00

Yesterday, Tommy wasn't feeling well all day. He had finished his antibiotic that morning from the other hospital visit. His fever was low until about 4, then it was all the sudden 101. So again he had to go up to the ER, got pumped full of more antibiotics and luckily got to come home, BARELY! His ANC was 1000, and I thought it was 500 and they have to be admitted, but it's actually 999. So we are so lucky he didn't have to stay at the hospital. We might as well claim residency at Primary's since we visit so much anyway. I am grateful that it was nothing serious again, but it sure gets old going to the hospital every stinkin' fever! I can't wait until spring is officially here, these flu's go away so we don't have sick kids everywhere. We love you Tommy and pray that your body continues to be strong enough to fight this stupid cancer.

Happy 5th Birthday Tommy!

2009-03-20T21:17:00.000-07:00

Tommy celebrated his 5th birthday yesterday! He had a great day, full of fun and family. Tommy woke up and the first thing he said was, " Mommy, I'm 5 now am I bigger?" It was adorable. Tom made him birthday pancakes in the morning, opened his "Indiana Jones Lego's" and put them together for the next few hours. Tom and I took Tommy to lunch, his choice "Red Robin" how could you guess? He loves that place, I think we need to take him to more restraunts. It was fun to have him one on one, he is so fun to talk to. I am so happy that he had such a great day and felt so well. Then we all went out as a family to Bonsai, the kids love that place. Tommy loves watching the chefs play with their knives, imagine that. I hope you had a fantastic birthday buddy, and many more happy birthdays to come!

My five favorite things about Tommy are...
1. He makes me laugh! There is always something he says or does that keeps us laughing, even through the hard times.
2. I LOVE his dimples, and I am so happy they are back!
3. I love that he is like his Daddy, "Tough on the outside, and a little teddy bear on the inside!"
4. I love that he is such a great brother to both Brooklyn and little Zachy. He is so protective of them and loves them so much.
5. I love that he is such a FIGHTER! He has always been by far my toughest kid. He and I have butted head his whole life, but I wouldn't want it any other way. That is the reason he is getting through this cancer like a CHAMP, because he is such a FIGHTER!
WE LOVE YOU TOMMY! WE ARE ALWAYS ROOTIN' FOR YOU!

Our first Unexpected visit to the ER

2009-03-17T15:18:00.000-07:00

Tommy had to go to the Er the other night because of a fever, it finally happened. All those nights of checking his temp 3 times a night and worrying that we'd have to make the trip to Primary's. He had had a fever all day below 100.3, then about 9 that night it got to 100.3. The doctors say that if it stays at 100.3 for an hour, you have to bring him up to the ER. So Tom had just barely walked in the door from Wyoming, and off he went for a long night at the ER with Tommy, what a trooper! They had to wait in the ER with all these RSV kids, that is a little worrisome. I think they were there a total of 6 hours, for what ended up being a stinkin' ear infection! That is a little frustrating don't you think? I know they need to keep these kids healthy and they are making sure it's nothing too serious before it becomes something serious, but come on! They need to have a different set-up, like open the clinic, check the blood counts, give them their antibiotics, and send them on their way...In a perfect world I guess. So he was given his antibiotics and was on his way, he is feeling A LOT better since then. We we go in again this week for another additional intesified dose of Methotrexate Chemo, and just waiting to get those fun mouth sores again. His counts are dropping substantially each time, which is what they expect over this course. So here we go into Spring and great weather, and Tommy's going to start feeling yucky again...Good Times! I am just grateful that he has had so many good days, and many yet to come, I'm sure. It could always be worse, right? I think everytime we go to the clinic, there is a little child that has it worse than Tommy, it really makes you grateful. We love our little Tommy and are so grateful that he is such a stud! Thank you all for your continued prayers and support!

It's no fun bein' sick!

2009-03-13T17:02:00.000-07:00

Tommy has had a tough week this week. He caught a cold and it has been really hard on his little body, he got his awful cough back that keeps us all up at night. He hasn't had a lot of energy either. I'm bummed, now that it's nice weather things are supposed to be great, right??? I think he may have an ear infection too, good times. Bless his heart, he is still trying to be happy. Tommy is as always OUR HERO!

Go Jazz!

2009-03-05T16:51:00.000-08:00

Tommy was a lucky little guy last night, he was able to go to the Jazz game with Tom! He has been waiting until his counts were high enough and he was feeling well enough to go, and he was. He was SO excited, he wore his jersey all day and told all his buddies he got to go to the Jazz game with his Daddy. Tom said he had a great time, got a few treats, and checked out the Jazz dancers. Tom said he kept asking when another time-out was coming so the Jazz girls would come back, "Ladies Man". GO JAZZ!

Moving onto Phase 3...

2009-02-27T20:26:00.000-08:00

Tommy is now past the first two phases of his treatment, only like 2 3/4 years left...Whoo Whoo! We have had a great week, Tommy has been feeling really well. I wish we could have stayed in phase 2 for the rest of the time. Those chemo pills he was taking really weren't bothering him. His counts didn't drop as low as they had anticipated, and he wasn't sick from them either. He was able to go to school quite a bit, and loved every time he could go. He is back to his normal loud, crazy, mischievious self. Yesterday, he even caused some problems at preschool! As I was picking up he and his little buddy from school, all the kids were outside waiting and the fire alarm was going off...yes it was Tommy! That was the first thing I thought of when I picked him up. He got in the car and his friend told me Tommy pulled the fire alarm, but his teacher told me he didn't. I think she wanted to protect him. Tommy was upset, and said he didn't. Later that night we got a call from sweet Miss Marilyn, the owner of the school. She told me what happened and that Tommy and his little friend were daring eachother to pull it, and they did! I told Tom what happened, he had to hide his laughter because he did the same thing when he was in first grade! So like father-like son, I guess. Little Stinker! So we told her we would have him come in to appologize, and he did today. He has to earn $5 to pay for the damages. It's hard not to laugh! I think he is feeling a little TOO good right now...

We got a week off from the clinic, and Tommy didn't know what to do with himself. I guess it threw him off schedule, every day he asked if we were going to the clinic. He wakes me up early a couple days to see if we were going, excited I guess, go figure. Finally for him it was thursday again, and yes we "got " to go. I think he likes the one on one with mom and dad, and he likes Dr. Barnette. He kinda flirts with the nurses so maybe he likes them too, not to mention he gets to play his DS for 2 hours, that could be the whole reason right there!

When they went to access his port the day before to get his blood work, the home health nurse had to poke him like 4 or 5 times to try to get it in. I think Zac may have moved the port a little when he kicked Tommy in the chest. So now it's a little harder to access, and it causes Tommy a little more anxiety, but he did great! His counts were way back up to 4000, so this week we need to go somewhere fun before they drop again. The next phase lasts 2 months, and it'll be a tough one. we go up every 10 days for this phase, so we get a couple more days off-yeah!! They will give him two types of chemo every time, a vincristine, the same chemo he has had a ll along, and the methotrexate which he usually gets in his spinal fluid for the back pokes. The methotrexate causes him mouth sores and makes him sick, so that is something to look forward to. We're going to have to get some of that "magic mouthwash" everyone's talking about, Fun! So every 10 days they will increase the doseage of chemo they give him, so he will progressively get worse over the next couple months. He has been a trooper, and we are so proud of the way he is handling everything! We love you Tommy! Thank you all for your continued prayers and support.

Two month Anniversary!

2009-02-16T13:25:00.000-08:00

Well today is Tommy's 2 month anniversary from the day he was diagnosed with Leukemia. It really is amazing what this little 4 year old has had to endure in just 2 short months, and how much more he will have to endure, unfortunately! It sure seems like it's been 4 times as long as it has been, but we are grateful that we are past these first 2 months. We are so grateful that in just 2 months he has reached remission, that these doctors have helped his body recover to this point. I am so grateful for the research that has been done for cancer, and how far they have come with the knowledge of fighting Leukemia. I had an uncle who had the same type of Leukemia that Tommy has about 40 years ago, and unfortunately he passed from the disease. Back then there wasn't a regimen like there is now, they didn't have a good cure rate, and they didn't have the knowledge they do today. I am so extremely grateful to the wonderful doctors and nurses who are taking care of my little boy so that some day he will be just like the other boys again.
This last couple weeks have been wonderful! Tommy has gone to school a few times, and has been able to go to his friends houses to play too. He has been acting a lot more like the old Tommy, both good and bad. He has been running and playing, and hasn't complained too much of pain or sickness. I thank my heavenly father for giving him this opportunity to feel so well before we undergo a few rough months ahead, and of course for my sanity too! His counts are lower than they have been this whole month, so we are going to have to keep him home this week and hope that we can keep him healthy. My other kids have been sick with the flu, with high fevers, so I am praying that Tommy won't get it. If he does get a fever of 100.3 or higher that lasts an hour, we have to take him to the hospital. If his counts (his ANC) are higher than 500, they will give him an antibiotic and make sure he's alright, then send him home. If they are lower than 500, he has to be admitted to the hospital until they can get him feeling better. So this causes a little anxiety, I find myself going in his room a few times at night checking his temperature, I am a little peranoid of the whole fever thing.
Overall, he is doing well right now. The next 2 phases are going to be pretty tough on his little body, so we will try to enjoy the rest of this one. If his counts are below 750 at the end of this month however, he can't move on to the next phase until they are 750 or higher. I hope we can finish off this month strong! Luckily Spring isn't too far away so we can kick these sicknesses, and things should get a lot better.
Thank you for your continued support and prayers, you are all pulling us through this tough time!

Tommy's Make a Wish Evening!

2009-02-02T12:13:00.000-08:00

A few weeks ago Tommy recieved a package in the mail, in it was a cute little castle, and it had a special note inside that read... "It is our deepest honor to invite you and your family to come visit A WISHING PLACE for the special occasion of making your wish. Please bring this key with you when you come, for it alone will open the WISHING ROOM at the top of the WISHING TOWER. We eagerly await your presence." So Tommy was thrilled about this key that was going to open a secret room, he carried it everywhere with him. So the other night we were lucky enough to go to the Make A Wish building for a special night just for Tommy. When we got there, there was a big star sign that said that said "Welcome to a Wishing Place Tommy"
Tommy couldn't be happier! They brought us inside, they showed us their star ceiling. It is where they hang these beautiful metal stars, and each one represents a wish that has been granted to a child who is fighting a life threatening disease. There were hundreds of stars.
We went upstairs to make Tommy's wish. Tommy sat down and was being as silly as ever. They asked him what his wish was, and he said "Disneyland", and wanted to meet Indiana Jones. They suggested Disney World, and that sounded awesome to Tommy. They told him they have a special hotel called Give Kids the World that only kids with life threatening illnesses can stay at, and they give you front of the line passes for the parks. That sounded pretty good to Tommy, so we wrote down his 1st wish to be "To go to Disneyworld", and if they can't grant that because the docotrs think he isn't well enough to go or something should happen, they have him make a 2nd wish. His 2nd wish was to meet Indiana Jones, I don't blame him really. Then they roll up the
wish and put it into the golden tube that seals up safely so only the "wish wizard" can read it. We all made a wish for Tommy too. He was absolutely dying to use his key to open the secret door, he was trying it everywhere he could. He found the "Wishing Room" door and unlocked the room with his special key. The room was pretty amazing, it was round and it had a waterfall in the middle. The floor had these see-through tiles that Tommy had to follow, they lit up around the room to the wishing spot. It looked like a big golden cone. There we all read our wishes to Tommy, it was pretty emotional. Of course Tom and I wished that he could be able to be a normal kid again soon, to play with his friends, to be able to go to Kindergarten next year, and to be able to play soccer with his buddies. Then he put his wish inside the wishing spot and sent it to the wishing wizard to grant it soon. So as soon as the doctor says he is healthy enough to go, and it's a good time in our treatment to leave, we are on our way to DISNEYWORLD!!!

Afterwards we went downstairs and they gave us Root Beer Floats! I am so grateful that these wonderful people have created and donated to this foundation. I know when we are able to we will contribute to the Make a Wish Foundation for the rest of our lives. These little kids deserve these wishes SO MUCH for all they are put through, and to make them feel like a kid again for a short period of time. We are really looking forward to taking Tommy and the kids on our vacation, I can't wait to see how happy he will be. It was hard going home after because he thought we were going to disneyworld right then. He started to cry when I told him we had to go home. We told him that after the doctor says he's healthy enough to go, we can go. Then Tommy says,"I am healthy, I'm not even coughing and my cancer is out of my body too!" It just broke our hearts. If we could we would take him all over the world to make him happy.
He still has his key and is so excited that we get to go back when they grant his wish!

Moving on to the next Phase!

2009-01-28T20:33:00.001-08:00

This week we got some great news!! We had been waiting all weekend for the results of the repeat tests they had to do last thursday, this test was crucial. It would tell us whether Tommy was still in remission like they thought, or that he was one in a million that the leukemia comes back in the first month. So the doctor finally called us tuesday morning to tell us the good news. They couldn't find any signs of leukemia in Tommy's blood, that is such a blessing! We are so relieved and grateful for all of your prayers.
So the next step is starting the cosolidation phase, we started tuesday. He got his regular dose of chemo, the Vincristin and he will also have to take a chemo pill called 6MP every day for the next month. The side effects for this one are mouth sores (so fun), vomiting and nausea, skin rashes or acne, and low blood cell counts. So the next month sounds like it's going to be a lot of fun, so we are going to live up the next week or so until these side effects kick in. Unfotunately his counts will start to drop again, and he probably won't be back to school as much as he has been. He has absolutely loved the few days he has been able to go, to see his friends and feel like a normal kid again. I have to say I have loved the break too! We will have to go back to being very careful where we go, who comes over, and major hand washing!!
It is such great news that he is in remission, unfortunately it won't get a lot easier for at least 5 or 6 more months. A lot of you have been wondering what is to come. Here is a little rundown of what I know so far. These first 6 months (if everything goes as expected, without any major sicknesses or delays) Tommy will go to the hospital for chemo and back pokes, muscle shots, bone marrow biopsies etc. once a week. He will continue taking his chemo pills at home everyday too, and he takes an antibiotic also. Once we hit the maintenance phase, which is usually about 6 months into the treatment, Tommy will only have to go up to the hospital once a month for chemo. I think he has to take this chemo pill everyday too, don't know for sure, and the steroid will be reintroduced throughout the process for short increments as well. So that is as fun as our next 3 years gets!! As long as I can get through these first 6 months, we will be wonderful!! Heck, if i can get through this blasted COLD weather and actually go outside, we will be in heaven. We are a little stir crazy around here. There are only so many puzzles you can put together, stories you can read, movies you can watch, games you can play, and wii games we can beat before we start getting a little bored. I have to say I am pretty proud of myself, I have helped Tommy beat all the levels of Lego Indiana Jones!! Ya, I know I am not the gaming person, I have to admit that I did have fun. There were days that Tommy and I would sit and play that for hours, that is how pathetic my life has gotten.
I have learned a lot in this short 6 weeks, I have learned more patience, unconditional love, more compassion, I've learned a lot more about Leukemia through my hours of research, obviously how to play the wii, how to be a nurse, a mom, a waitress, a wife, a friend, and a crazy person all in one day! WE definitely have our good days and bad days. It's definitely not easy, and i wanna to roll over and die sometimes, but I figure if Tommy is tough enough to handle all that he is going through, I can do it too. It's all worth it, as long as my little guy is alright. We love you little Tommy, "TJ". You're gonna beat this thing...Kick cancer's butt!!

Kinda Frustrating!

2009-01-23T15:12:00.000-08:00

Tommy has lost a little bit of weight this week, since we are off those nasty steroids, thank goodness! I can almost see those cute dimples, we miss those. His appetite has decreased a lot, hopefully it doesn't go down too much.
This week was hard, Tommy has been sick with a cold. He has had this croupy cough since about Sept. and it's just gotten worse the last few days. He was up all night a couple nights this week coughing, and having fevers. The fevers are the scary part because if his fever gets to be 100.3 and stays there for an hour we have to admit him to the hospital. Tom was working out of town monday through wednesday this week, so every night I would pray and pray that his fever would break so I wouldn't have to take him to the hospital in the middle of the night all by myself. And amazingly it did get to 100.3 one night, but broke before the hour was up. That was an answer to my prayers. We had to put him in the shower and steam it up, or take him outside so he could breathe, it's always a scary thing. Tommy wasn't able to go to school this week, so it made for a long boring week! I had a hard week, one of the hardest I have had so far I think.
So, we went to the hospital again yesterday, Thursdays have turned into Tommy's, Tom's and my least favorite days now. We were anticipating the results from the Bone Marrow Aspirite they did last week, that showed whether or not he had the MRD (Minimal Residual Disease). The doctor told us 2 things, that one he was MRD negative, which a is great, meaning that there were no signs of leukemia in his marrow. But contradicting this test is the test they do under the microscope, that isn't usually as accurate, this one showed that there were now 5%. The microscope is not as useful because it doesn't show the make-up of the cell, they don't know whether those cells are lymphoblasts or if they are newly developing cells. The doctor really thinks they are new cells, however they had to repeat the test again yesterday so they will know for sure. The results of this test are the determinate for the next phase, the consolidation phase. So for now, we don't know where we stand, we are either going to do 2 more weeks of the induction phase, and see where we are after that, or we will go on to the next phase (hopefully). He is hoping that he can rush the turnaround on this test so we will know by monday or tuesday, then they will start chemo reguardless. One nice thing about this is that we didn't have to choose whether we would continue the clinical trial or not. I never felt good about the trial, it extends the time until maintenance by 2 to 3 months, it's a lot more drugs and chemo's they are administering, and there are a lot more risks involved. And since it is a "trial" they don't even know whether it will help or hurt these kids. The doctor just told us that we will stick to the standard of care with Tommy, which has a wonderful cure rate between 88-92%. I feel a lot more comfortable with that, so that was a blessing. So when I find out the results I will let you all know which way we are going.
Yesterday was the first time that he didn't cry all the way to the hospital. He was being so brave about it, "so when we get there we go upstairs, then they check my weight, and then the nurse will put in my port, right? Mommy, I want her to count to 3 first before she does the poke, ok?" How cute is that? He was breaking my heart, and making me proud at the same time. It was the first time since we were staying at the hospital that he talked to any of the nurses or doctors, it was so good for them to see Tommy's cute little personality come out again. He was showing all the nurses his games, and how well he knows his letters, he was a little flirt yesterday. Thank goodness we are off those steroids because he had to fast until 1:30pm again. So up until he woke up from his anesthesia he was so happy. It was so nice to have him so happy and so cooperative! He even got to make SNOW in the RTU waiting room. We're going to have to get us some of that.
So while they were doing their procedures, the back poke and the bone marrow, Tommy threw-up a little while he was sleeping. They had to stick the dreaded tube down his throat to suction it all out, and of course they scratched his throat all up, poor guy. He was already struggling with a sore throat, and a cough, and he is awful when he wakes up for anesthesia anyway. Today was A LOT worse! Usually you can give him his food, give him a few minutes to wake up and he is alright, oh no, not today. He had a nebulizer on his face, so that made him mad, plus they scratched the heck out of his throat, and he was coughing terribly. He wouldn't take a drink or eat anything, he wouldn't let them give him any pain medicine, and he wouldn't talk or let anyone talk to him. Good Times! We love the RTU!
Hopefully we will have some good news soon. Thank you all for following this blog, it is so nice to know that you all care so much for our little Tommy John! We love you all and pray for your families health. I wouldn't wish this on my worst enemy, it is definitely a battle. Please keep Tommy in your prayers.

Back to School!

2009-01-19T08:27:00.000-08:00

I promise I didn't force him to go, he just doesn't want to smile!

Tommy was able to go to school twice last week. Wednesday, he woke up at 6am ready to go to school, unfortunately school doesn't start until 11 so that made a long morning. When I dropped him off, the teachers were all so excited to see Tommy. They made sure the school was sanitized and that all the kids would sanitize their hands too. I talked to his teacher about everything, and she actually went through cancer too, so she is well aware of how careful you need to be with kids and germs. He went right into singing time with his friends and sat between his 2 buddies who also had their heads shaved. They both looked at him and had to do a double-take, they said "hey Tomy" and gave him a big hug! It was so good to see him enjoying himself, and being a normal kid again. He sat and sang the songs with the kids, had a big smile on his face. I was really nervous to leave him, it was like the first day of school all over again, only worse! They assured me everything would be fine, and they'd call me if anything happened or if he was too tired to stay. When I picked him up he was so happy, he had a big smile on his face. Miss Maria said Tommy fell asleep so they let him take a little nap, and all the little boys and girls whispered while he slept. How sweet is that? He was exhausted when he got home, ate lunch and then slept for a few hours. He went back on friday, and had a great time. He took another nap, so next time he goes to school I think I will send him with a pillow and his blankie. I'm sure there won't be a ton of days in the next 6 months or so that he will be able to go to school, so we are going to enjoy the ones we have. He was so happy to be able to get out of the house and play with his friends. A couple of the kids said,"That's not Tommy, he's a different Tommy". Tommy came home and told me that, he didn't understand why they would think he was a different Tommy. It was hard to see him affected by what the kids were saying, usually he doesn't care. He doesn't know how different he looks with all the weight he has gained, which is good. So I just told him it's because you don't have any hair, and he was ok with that.
So we are off of the steroids, yeah!!! So we are slowly seeing the "roid rage" disappear, and the appetite is still there, but will slowly taper off in the next couple weeks. His legs should start to regain their strength, the headaches should go away, and we don't have to take those darn pills every morning and night. So Tommy couldn't be happier that we are done with steroids, for now. They will reintroduce them in the 3rd phase of treatement for a couple weeks.
Last thursday they did what is called a "minimal residual" test, which detects if there is any leukemia left in his blood. They send this one to Seattle where they have way high-tech machines that can detect even the slightest amout left in his blood. We should get the results back before thursday. If there is less than .1% Leukemic cells left they will place Tommy in the "standard risk" group, and he will get standard, possibly slightly augmented treatment from here on out. If it is greater than .1% then he will be placed in the "high-risk" group and his treatement will be a lot more intense, and the cure rate goes down for the "high-risk" patients. Most of their patients are in the "standard" group, so we are PRAYING that he will make into that category! We will let you know when we find out. Also, thursday if he is placed in the standard group, we go on to the next phase of treatment which is called the consolidation phase, and get a whole new roadmap of the next month to two months. If the leukemia is still there, they continue with the induction phase, which is what we have been in this month, until they get rid of all that cancer. Good times!
This week we are enjoying having his ANC up to 3000, which is almost normal. So Tommy has been able to play with friends and cousins this week and has loved it! He has laughed and smiled a lot more this week too. It is so great to see him feeling and acting a little more like my little Tommy. And I have to admit, it is so nice to have a little bit of normalcy back into our lives, for now anyway. The doctors said it won't get easier for a long time, unfortunately, and his counts will probably fall all the way back to 100 this month. We are still practicing good hand-washing and careful of where he goes. For now, he is pretty healthy and we celebrate his good days. If you look at the whole picture and think that we have to fight this for 3 years, it gets quite overwhelming, so we take it one day at a time. Please keep Tommy in your prayers! This fight isn't over, it's only just begun. Thank you all, we love you and are so immensely grateful for what you have done for our little family.
BTW do you like the background, Tommy picked it. He thinks it's "Awesome!"

Hair was Flyin'!

2009-01-13T19:47:00.000-08:00

Our Head shaving party was a HUGE success, we had so much support from our families, friends, and neighbors. Thank you all SO MUCH for coming to support Tommy, it really meant a lot to him. We ended up shaving way more heads than we anticipated. We had 26 boys and dads shave their heads. It was so fun to see all the little cousins and friends want to do it for Tommy, he has the best friends and cousins! It was emotional shaving Tommy's head , I think everything kinda hit home. He really looks like a cancer patient now. I am so grateful we have so much support for our family and our little Tommy, it is truly overwhelming! Tommy was so excited about his party, we had to end the celebration with FIREWORKS! It was a fantastic night, and all dedicated to Tommy, he so deserved it. Thank you ALL for coming and please thank your cute boys for shaving their heads in the middle of the cold winter for Tommy.
This week has been hard on Tommy. His body has weakened a lot, he can barely walk. One of the side effects the steroid has is that it weakens the bones over time, and it is definitely taking it's toll on Tommy. Thank goodness we are off that stupid steroid this week, I think. Also the chemo that he is on, Vincristin, causes the nerves to be super tender. So everytime you touch Tommy, it hurts. Everything on his body was hurting him today from the tips of his fingers to his toes, poor guy! We switch chemo's this month too, so that side effect will go away and then we get to experience all kinds of different side effects...GOOD TIMES! He didn't want to go to school Friday or Monday, we are hoping he will want to go tomorrow. As of today he really wanted to, I think it'll be good for him to get out and be with his friends. We'll let you know how that goes. The next 3 or 4 Thursdays he has to have Lumbar Punctures and Bone Marrow biopsy's to make sure that the leukemia is still dying. This week it should be gone, we are praying! If it isn't at 0.1% or lower Leukemia cells left, he will be placed in the high risk group and will have to undergo more intense treatment. Please say a special prayer for Tommy that it will be gone, so he won't have to suffer any more than necessary.
We love you all and are so extremely grateful for all your continued prayers, thoughts, messages, the meals that you all have been so generous in bringing by, the help with our kids, the cleaning lady you all have donated to (THANK YOU! THANK YOU! THANK YOU!!), being Brooklyn's taxi, coming over and forcing me to get out of the house, doing my laundry, cleaning my house, fasting for Tommy, putting his name in the temples, snowplowing our driveway, and just being there for us, whether we laugh, cry, or vent about how much we hate cancer. I can't tell you how much " We are thinking of you in these hard times" means to us. I can't express to you all our sincere gratitude. I have a hard time accepting help, I am working on that. Hopefully someday we can return the very much appreciated gesture you have all so graciously shown our family, let's just hope its under different circumstances. You will all be blessed for your charity. May God bless you and your wonderful families this year! THANK YOU ALL!!
By the way, I have some more great pictures of the whole group, my computer doesn't want to let me put them on. I will work on it.

Head Shaving Party!

2009-01-10T14:37:00.000-08:00

So it's that time, Tommy's hair isn't going to hold on much longer, it's time for a haircut! We are having a little head shaving party for all those who want to come support Tommy, little boys, big boys, moms...hey you never know. It will be at our house this coming monday at 5:30. Bring some clippers if you have some, there might be a few going at the same time. We will have pizza and cupcakes to celebrate. Please let me know if you can come so I can know how much food we'll need. Hope to see you soon!

GREAT NEWS!!!

2009-01-08T13:50:00.000-08:00

We went to the clinic today, just for chemo. We finally saw Dr. Barnette, our Oncologist. We haven't seen him since we were at the hospital, it was so good to talk to him. He is the Oncologist who is heading up the clinical study for Leukemia that Tommy is currently a part of. So everything is so much better hearing it first hand, and he is an incredible doctor, Tommy loves him. We have GREAT NEWS! The amount of leukemia left in Tommy's bone marrow is now less than 5%, it's only 1.2%, so has reached REMISSION!!! I can't tell you how happy we are, we have been praying, you all have been praying and our prayers are being answered. This is such great news, it isn't the end by any means, but it puts him into a great position for cure. The day 29 is a huge turning point, which will be on Jan. 15, they examine everything, do another bone marrow biopsy and then we have a definite idea of where we are going for the following 5 months. The test on day 29 will put him either in the low, standard or high risk group. Also his ANC went from 100 last week to 1200!!! When they told us this Tom and I about jumped through the roof! That is about where they want it to be after he hits the maintenance stage for the next 3 years, so that is SO GOOD! The doctor told us of course we have to still be super careful with sick people around him, good hand-washing, etc. but he can have friends over if they are feeling well while his counts are up, and he even said he can go to school. I don't know how I feel yet about the school thing, it's still very risky with him still succeptible to catching sicknesses, and getting fevers, but it would be great for Tommy if he is up for that. We might send him to school monday, depending on how he feels, and how I feel too,-scary! His ANC will go up and down a lot during the next 6 months, so for now we need to let him be a kid, send him to school, take him to a movie, etc. After our appointment we CELEBRATED! We took him out to Red Robin, and actually went inside. Tommy hasn't gone anywhere but to the hospital 4 1/2 weeks, so he was nervous. He first told us he couldn't go inside because of germs, but we said it was OK because his body was healthy right now. He ordered himself some mac n' cheese of course, fries, and a shake! And he so deserved every bit of it. We are going to take him to see a movie tomorrow, probably a matinee so there aren't quite as many people there. We couldn't be happier, and couldn't be more grateful to you all for your constant prayers, THANK YOU SO VERY MUCH!! Please continue to pray for him, this definitely isn't the end, but we are so happy to have good news!

Time for a Haircut!

2009-01-07T08:51:00.000-08:00

Tommy's last mohawk for a while...

Today started out sad. We have been pulling on Tommy's hair everyday since he started chemo, and today was the first day that it started falling out. I was really hoping that he would be the one in 100 or so kids who's hair doesn't fall out with all this chemo, no such luck! I started to cry! Tommy was wondering why I was crying so Tom told him that he would start to lose his hair from the medicine he was taking. Tommy actually took it a lot better than I had expected, he just smiled and said OK. We told him we're going to have all his buddies and cousins come up to have a head shaving party for him, he liked the sound of that. So this weekend we're gonna be cuttin', so if you want to join in and support Tommy, he would love it. I am just glad that Tommy is a boy, I can't imagine how much harder it would be to watch your little girls hair fall out. It has been an emotional day for me. Tommy is doing fine, he's just eating mac n' cheese at 9:30 in the morning, that is after he had a huge bowl of Honey Nut Cheerios (he loves those), a banana, toast, chocolate milk, and juice. They're not kiddin' when they say these steriods make him hungry! It is so cute to look at him, he doesn't look like little Tommy anymore, his face is so chubby and his belly isn't so little anymore. We love his cute chubby cheeks, and he does too! Tommorrow we go up to the clinic just for chemo-thank goodness! Tommy couldn't be happier that we don't have to go back to the RTU tomorrow. He has prayed everyday that he wouldn't cry when they put the port back in, he's such a brave kid. I was thinking the other day about all the times that Tommy and I would fight, he has always been my toughest, strongest-willed child. It makes me so sad that we had to butt heads so much in the past, if I would have known Tommy would have to endure such a trial, I would have treated him a little differently. I am so sorry, and I know that he knows that and knows that I would do ANYTHING for him. Maybe this trial is the reason why he has been so tough his whole life, so that he would be prepared to fight this HUGE battle. I know that he has angels surrounding him, helping him get through this difficult time, because he handles everything so maturely for a 4 year old. I don't know how he could be as strong and sweet as he has been otherwise. With these steroids they say that the kids can either be really angry or really happy. The only time he is really angry is when we are at the hospital, other than that he has been such a sweetheart. He tells me he loves me all the time, and makes sure to thank me for helping him. Thank you all for your continued support for our family and our sweet Tommy. He will continue to need your prayers, it is what is getting us through this hard time.

A good day!

2009-01-03T20:20:00.000-08:00

Tommy had one of the best day's he has had in a long time yesterday. It was so good to see him without constant headaches and tummy aches. We took him to his appointment in the morning, and of course once again he can't eat after midnight. For a kid on "roids" that is really hard to tell him he can't eat! So we got there and they accessed the port, Tommy did a lot better this time. I think he knew what to expect a little more. They drew blood, his counts are still ok, he didn't need a blood transfusion once again which is great. Then we went down to the RTU, we only had to do the bone marrow aspirit. They still sedate him, but at least he wasn't as sore. When he wakes up after anesthesia he is a total monster, yelling at everyone again. After he ate his usual chicken nuggets while they gave him his chemo, and we were on our way. His ANC is still at 100, so we have to be very careful still of who comes to the house, and we are washing our hands so much they are cracking.
Tommy actually ran around with Brooklyn and Zac yesterday, he hasn't run for a couple weeks. He was making his funny faces and doing his chipmunk voices, we were all laughing at him. It has been so good to see him act more like himself. Hopefully in the next few months we will see a lot more of him feeling good and able to do more things he used to do.
He is really excited that next week he only has to go to the clinic to do chemo. He hates having to go to the RTU, can you blame him? He knows when he goes down there he has to go to sleep, and he never wants to go to sleep.
He was so cute today in his prayer, he said "bless me to be able to not cry when they put in my port next time, and thank you for mommy for not hurting me when she took off my bandaids". I got all teary-eyed. He has been such a sweetheart lately, along with the moodiness. He tells me he loves me all day long. All the sudden my little Tommy the trouble-maker has turned into Tommy the peace-maker, always telling the kids not to fight. He hates whenever any of us go anywhere. Tom has been by his side as much as he possibly can, when he has to go to work Tommy asks when he will be home all day. Brooklyn has a hard time going to play with friends because Tommy wants her here so much. And I have watched more movies the last 2 weeks than ever in my life because Tommy wants company while he's watching the. I really have enjoyed spending that time with him, anything I can do to make him happy!
Taking his pills and all his medicine has gotten a lot easier, Tommy has just kindof accepted it. He used to fight it like crazy, now he still hates the taste, but he will do it without a battle. He is such an amazing little boy! It is hard to believe that he is only 4, I don't know many 4 year olds that could handle this horrible, life changing disease as well as he has. I am so proud of him, he is my HERO! He gives me the strength I need everyday, I just think "If Tommy can do it, so can I". We love you little Tommy! You are a CHAMP!

Happy New Year!

2009-01-01T20:52:00.001-08:00

So it is now 2009! What a year 2008 has been, hopefully this year won't bring us quite as many surprises. So tomorrow morning we are headin back to Primary's for our 3rd round of Chemo! He also has to get another LP and Bone Marrow test done, this was the week we were hoping to have off with those tests. The results of the bone marrow last week showed that Tommy has more than 5% leukemia cells left in his blood, meaning that he doesn't fall into the "early responder" group of the kids tested. Only about 15% of the kids fall into this category, but we were still disappointed that he didn't, it is discouraging. He was really doing well until this week, this week has been a lot harder on his body. He has been a lot more tired. Other than the time he spends in the kitchen eating, which is a lot of time, he has been on the couch. We have been doing naptime everyday, which is a dream, but he requires it now. It's amazing how in just a couple weeks, my little Tommy who is usually the craziest of all my kids is now the one laying around all the time. It breaks my heart to watch this STUPID disease wipe him out like this. Wish us luck tomorrow! Thank you all for your constant encouragement, it really helps. Thank you for your prayers, I know they are what is getting Tommy through this tough time as well as our family. My cute mom, grandma and aunts have put Tommy's name in just about all the temples around the country now I think. I know that is such a blessing, THANK YOU ALL!!!

Done With Round #2!

2008-12-28T13:00:00.000-08:00

Tommy was pretty nervous when we got there.

This is the port, and the Chemotherapy.

This is the oncology clinic

They give the cancer patients
free hats when they come in,
Cute huh!

Going back home!

Tommy went in for his 2nd round of Chemo on Saturday. He wasn't able to eat after midnight last night because they were going to have to do anesthesia for his routine treatment. We had to wake Tommy up about 6:30, which waking him up normally isn't the funnest thing, but to wake him up and tell him he has to go to the doctor, that's much worse. I told Tommy we had to go to the doctor last night, and he was OK with that, until today I accidentally said we had to go to the hospital, and he freaked out. It was altogether a tough morning.
We were supposed to be to the hospital at 7:30, that was the day after the HUGE snow storm. We left our house with plenty of time, the roads were ridiculous, even I-15 hadn't been plowed. It took us a lot longer to get there that morning, but we made it. When we got to Primary's we went to the 4th floor to the oncology/hematology clinic. When you get there they will always check Tommy's height and weight first just like at the doctors office. Then we had to access his port, Tommy knows we have to do that but doesn't know it involves a needle. We didn't want him to know, since he had the numbing cream we knew it wouldn't hurt, and we could distract him as they put it in. So that was the plan until this "Child-Life psycologist" comes in and starts talking to him about what they are going to do to him. We had told them before that Tommy would do better if he didn't know there was a needle involved. So the "psycologist" pulls out a doll, shows him how they are going to clean him, that was fine, then she pulled out the needle, and it was all over. Tommy was screaming at her and at us. So we asked her to stop explaining it, I think it was making it worse, I'm sure she didn't like that. So then the nurse came in to do the procedure and we had to hold Tommy down, luckily though the numbing cream did work, and he was fine as soon as the anticipation was over.
They drew some blood for the labs, then we had to take him down to the RTU (Rapid Treatement Unit) for another Lumbar Puncture and Bone Marrow Aspirate and Biopsy, and he will be sedated for both.The lumbar puncture is to make sure they keep the leukemia out of the spinal fluid. They have found in the past that when they only threated the perriferal arteries of the body with the chemo, they killed all the leukemia there. However, later the leukemia would be found hiding in the spinal fluid because not all of the veins and arteries reach the spine and the nervous system, since it's an entirely different system than the cardiac system. So Tommy will have to have quite a few back pokes, unfortunately. The bone marrow aspirate is to look at the bone marrow, since all the blood is made there, they make sure the marrow is making the blood correctly, and to see how much leukemia is left. Then the biopsy is where they go look at it in the lab. They do use large needles so after Tommy will be really sore, the first time the doctor did it she had to do it a few times because the marrow was dry, OUCH!
So as we were waiting for the anesthesiologist to come talk to us, all Tommy could think about was what he wanted to eat! He wanted chicken nuggets from Chick-fil-a and ketchup and string cheese. So we made sure we ordered his food right away so he could have it as soon as he woke up. Tom walked him back to the RTU and watched them put him under, he went right to sleep. The doctor said everything went well, as soon as they were putting on the bandaids Tommy woke up calling for us and for his food. We got right in there and helped him eat his lunch. It was so funny, he was extra mad not only from the "roids" he has to take, but from the anesthesia. He was yelling at everyone, Tom and I were trying so hard not to laugh, because if we laughed he'd yell at us more. He was so hungry he was inhaling the nuggets, he put the whole thing in his mouth everytime. Luckily there was a respiratory therapist in there with us, but she was quite nervous watching him. He enjoyed his lunch and a yummy slushee they have in the RTU.
After we had to go back up to the oncology clinic upstairs for his Chemo. They put the chemo in and pulled his port back out. Tommy did really well, he was happy to get the port out again. Then the doctor came over and gave us his lab results. He is actually doing well, usually on day 8 they usually need a blood transfusion, Tommy's was good, his hematocrit was 32.6L. If it's less than 20 they will do a blood transfusion. His platelets (the cells in the body that make blood clot) were at 53L, which is why he was having brusing when we admitted him. When we admitted him on the 15th, his platelets were at 9, his hematocrit was at 12 and his ANC (Absolute Neutrophil Count) was at 2.0. That is scary how anemic he was, thus the pale skin and the bruising, the constant leg pain is from the leukemia inside his bone marrow causing it to swell and push against the inside of his bones. Tommy's ANC, that is his ability to fight infections, especially bacterial infections. A normal ANC is usually about 3,000- 5,000, so when it falls below 500 there is a greater risk of developing a serious infection. Tommy's is only at 1.0 or 100 so his immune system is pretty much nothing right now. We have to be extremely careful with hand-washing and kids coming over to play constantly, but especially now with his counts being so low. His WBC (white blood cell count) the infection fighting cells, is only at 1.8 right now too, which when we admitted him they were only at 2.4 which is why his croup wouldn't go away for about 3 months. It's all starting to make sense to me now, if only we had known a little earlier.
On the way home, Tommy was still hungry, we had to stop at McDonalds for some more chicken nuggets! They aren't kiddin when they say these steroid make you hungry, Tommy's going to eat us out of house and home. It's funny he's thinking of his next meal as he is eating the first. The other day we were drawing and he kept asking me to draw pictures of food. They say this month he will probably gain a couple pounds a week, which a great because I'm sure down the road when we switch chemo types, he'll start losing weight.
Yesterday was a crazy day, I for the first time in at least 2 weeks was going to go back to the gym. Tom stayed home with the kids, and he said take your time, you need it. I was so exicted to get away and get some exercise. Before he left he said make sure you check your tires because my tire has been leaking. So in my car is a PSI sensor, which is a dream. I checked it and it looked good so I took off. On my way down, Tom called me and said Tommy had a rash. He said he'd take care of it and call the clinic and ask them what to do. I was a little nervous to keep going, something told me to go home, of course I didn't. I knew Tom could handle it, and if it was serious I had my phone, I could come right home. Tom called me back and told me he was fine, they just said to give him benadryl. As I was on the phone, I was getting on the freeway and felt my car shake and start driving funny. I look down at my PSI thing and it says right front tire 3 then 2 then 1. I had a stinkin' blow out! I think I may have cussed, I'm sorry but it felt like everything that could go wrong in my life was. So I pulled over started crying and called Tom. Tom said he'd get someone over with the kids and be right down. As I'm waiting for Tom, three huge plows come by my and cover me with snow, not just once they came twice while I was sitting there, nice huh! My cute neighbor Sara came over to watch the kids, Tom came down to my rescue.
We did have a good night, Tommy felt well other than his constant head-aches and tummy aches, which are common side affect of the disease. Our sweet friends the Otts came and brought us a yummy dinner, thank you Janelle! Tommy has been a lot more tired than usual, he has gone back to taking naps everyday, and he's actually not fighting them. He has had fevers on and off the last few days, nothing too high yet. They say if he has a fever of 100.3 for an hour you have to take him to Primary's and they give him a general antibiotic. They treat all everything as if it's a bacterial infection until they can find out exactly what it is. And if they can't get the fever down or if his counts don't look good, they'll admit him. So we are hoping he can get rid of these fevers.
Today he's kindof bored, I am too. We are sick of movies, games, puzzles, coloring, and laying on the couch. If you have any ideas of things he could do that don't require too much energy let me know, it's going to be a LONG winter! We love you all and appreciate everything you have done for us. PLEASE KEEP TOMMY IN YOUR PRAYERS!

Merry Christmas!

2008-12-25T11:06:00.000-08:00

We had a very special family Christmas Eve last night. Usually we go to my mom's house to celebrate Christmas Eve, and she always has a really nice dinner and a special Christmas program with all the brothers and sisters and grandkids. Since we couldn't go over with my family because Tommy's immune system is so low, we stayed here and made our Christmas Eve just as fun and special.
My cute sister Holly brought us dinner, some yummy banana cream pie, and made us some sugar cookies for the kids to decorate for Santa. Thank you Holly, it was so delicious! So we ate dinner, had our special Christmas program with the kids singing and Tom and I told them some Christmas stories. It was fun to have it be just our little family, there was a very special spirit with us last night. After our program we had some banana cream pie and decorated our sugar cookies for Santa, they mostly ate the frosting-that's the best part! Then we watched the traditional "Christmas Story" and got them to bed. They were all so ready for bed and ready for Santa to come!
The kids woke us up bright and early to tell us Santa had come, so we jumped out of bed and opened our presents. Tommy got his millenium falcon he wanted, he was so excited! Tommy
was so concerned that Tom and I had presents to open too, he's so sweet. The kids got what they wanted, Santa was so nice to bring them what they asked for. After breakfast Tom made us his delicious "Tomcakes" as the kids call them, our pancakes. We hung out, put together the toys and played with them all morning.
It has been a great day, besides the BLIZZARD outside! Wow, what a storm! Our parents are both coming out to visit today, hopefully they can get here with the crazy weather, Tommy is really looking forward to seeing Nana and Papa, and Grandma and Grandpa.
Tomorrow we have to be to the hospital bright and early for Tommy's next treatment of Chemo and his back poke, and another bone marrow biopsy. So today we have to make sure it is as fun as possible for Tommy because the next few days are going to be pretty miserable again I think. He is not excited about going back to the hospital tomorrow, so wish him luck!

Tommy is so happy to be home!

2008-12-23T21:21:00.000-08:00

These Pictures were taken 3 days before he was admitted to the hospital.

Today was Tommy's 2nd day at home, and he couldn't be happier. We started the day off as usual, breakfast he had a big bowl of Honey nut Cheerios, then sat by the fire with Brooklyn and Zac and watched cartoons. We had the home health nurse come over and help us today, his name is Dillon, Tommy was actually kindof excited that it was a boy nurse. He came and de-accessed Tommy's port today, meaning he took it out, yeah! They will re-access it everytime we go to the hospital to get our treatments. But for now the darn thing isn't bugging him, and he can take baths without having to put plastic all over his chest.
He got to have his friend Niko over, yes he was healthy. Tommy wanted Niko to help him play Lego Star Wars, because apparently I am not good enough! So he enjoyed having a friend over to play with, they started getting a little wild, that made me a little nervous. Tommy wanted to go outside and play in the snow so bad today, it's hard to tell him he can't because he's sick when he isn't feeling sick. It breaks my heart that he is being put through this, he is being such a champ about everything. I wonder sometimes if he knows what is really going on, like he's being helped through this by the spirit. I hope so, I know I can't get through it with out Christ, I know He will help Tommy too.
Tom had to go to Wyoming today, the first time he's gone back to work in over a week. It was hard to have him away, I had a bit of anxiety waking up this morning and having to do it all on my own. Luckily it was a great day! Tommy really missed his daddy today, they are buddies. My mom came over and helped me with the kids tonight, we watched "Mr. Grinch" one of Tommy's favorite Christmas movies. It was good to have her here, Thank you for all of your help mom and for your words of comfort. I love you! My parents are leaving on a mission to Thiland in a few weeks and I know it isn't going to be easy on any of us, but I know as she serves the Lord they will be blessed as well as our whole family.
Tommy is really excited for Christmas, he has been counting down the days. He about fell over when I told him Christmas Eve was tomorrow night! He asked for the "Millenium Falcon" Spaceship from Star Wars, and I'm sure he's been a good boy this year that he will probably get it! I wish I could give him everything in the world right now just to make him happy.
I love you little Tommy, I hope you have a good night sleep and an even better day tomorrow.
Thank you all for your thoughts and prayers!

We're finally Home!!!

2008-12-21T19:47:00.001-08:00

Tommy got to come home today, after a long week of intense chemo, poking, drugs, doctors, nurses, scares, and lots of laughs and tears. We came home to a big Welcome Home Tommy sign on the door, and his Aunt Tami, Uncle Bryan and his Grandma decorated his room so cute with balloons, new bedding, and toys! We spent the night hanging out with Grandma, Nana and the family, it is sooooo good to have him home. He took his first bath in a week, and that was kindof tough because we had to make sure he didn't get his port wet, but he enjoyed the HOT water. He is feeling so much better today, and he is acting so much more like Tommy.
Today he had to get his first of many PEG shots into the deep muscle of his thigh. PEG is another chemo drug that kills the amino acid asperiginase (sorry about the spelling), which helps leukemia to grow. They have found that if they kill this amino acid they are helping to kill the leukemia as well. He was actually really strong, Tom told him they were going to do it before they did and he was really scared. The two nurses did the 2 needles at the same time into his thigh and Tommy was really stron, he cried a little but not too bad. They said they have a lot of kids that need to be held down because they hit and kick the nurses. I am so proud of him. They have to watch him for a few hours after to make sure he doesn't have any sort of reaction, if he does they don't do anymore PEG shots.
Before we left they had to give him another bag of platelets because his level was only at 21, which is pretty low. He had the platelets and we were able to go home. Taking him home was as scary or even more scary than taking home a newborn baby. I was making sure that we had the house clean, which I owe HUGE thanks to Meleesa, my sister and my cute nieces for coming and slaving away at home, THANK YOU! Tom cleaned the car, carseats, we drove very carefully home, obeying the speed limit which is a plus for Tom, and just as nervous as can be. Now I'm the nurse and I have to make sure he stays healthy and gets all his meds, he gets 2 doses of his dexamethazone steroid a day (the mad pill), prevacid for acids caused by all the leukemia cells dying, antibiotics, pain meds, stool softeners, and an anti-nausea medicine. WOW! I am quite overwhelmed.
We have an appointment Friday, the day after Christmas to get our 2nd round of Chemo, he has to get another Bone Marrow Biopsy, and another back poke (Lumbar Puncture) to continue to treat the spinal fluid for Leukemia that may sneek in there and hide. So that'll be another tough day, and then we'll come home and go up to Primary's once a week.
Thank you all for your thoughtfulness, all you wonderful messages, calls, cards, gifts, visits, generosity, and especially prayers. I am sure that I will be needing all of you who asked what you can do to help, I am feeling the pressure. Tom has been such a huge strength to me, I couldn't do this without him. He has been by mine and Tommy's side the whole time, even with all the other stresses he has to deal with. Nothing else matters now, it puts life into perspective very quickly. I am so happy to have Tommy home for Christmas, that is all I wanted. May we all think of Christ and his life and love for us as we celebrate this Christmas season. Merry Christmas!

Life Changing Week

2008-12-20T01:23:00.000-08:00

This has been a life altering experience for this little family. I'm probably not going to write a whole lot on this blog but leave most of it up to Heidi but I had to say something before I forgot.

Wow, what a week! One moment you have a perfectly healthy son and the next he's going through Hell. What I wouldn't do to take the burden he is bearing away from him and carry it myself. Unfortunately that's not the way life works. For some reason this little person has to endure something that no person should have to think about going through. It's one of the tests that Tommy has to overcome and I know he will. It just amazes me at how quickly life can change in an instant. This is the most humbling experience of my life. I thought I loved my kids before this and now I want nothing more than to spend time with them just to hang on to memories and let them enjoy their daddy. Nothing is more important. The trials that I thought were tough in our life before this are nothing compared to when someone does not have their health and just having to watch them suffer is so painful.

There is a positive side to this and a huge Silver Lining. Tommy could have been much worse. The cancer did not go into the spinal column, it was not the AML type of Leukemia, it's not an incurable tumor and he's such a stud about all of this. There is a very high cure rate which gives comfort. I never thought that a little guy could have so much Valor. It's amazing to see what the human body and spirit can endure when tried and tested. I thank the Lord daily for the positive results in the matter. This is going to be a good experience for this family. We'll be much stronger in the end and I know Tommy will pull through a fighter and survivor. I only wish I had his strength.

Tonight Heidi called me back to the hospital because Tommy had stopped breathing. I rushed back with snow packed roads and luckily was only at my bro-in-laws house picking up my youngest, Zac. John came with and we administered another blessing which I'm sure he'll need more. It just seems to me that in a way my boy wants to go home and get away from it all. I can't write this because it's making me emotional and for anyone who knows me I don't share my thoughts like this. But I know that he's not done hear and for whatever reason needs to stick around long enough to complete his task that he was sent here to do. Part of that task for him that was so important is happening right now, bringing people together and strengthening families. It's so amazing to me how the Lord knows best. This has litterly brought me to my knees and given me humility to know how to handle the situation that's been placed in front my family and me. It has brought people together. We have had an amazing amount of love and support. People really know how to rally when someone is down and it has blown me away at how many of you sincerely care and are willing to help in any way. Thank you all so much!

If there's anything that any one of us can learn from this is that life is fragile and you need to make the most of every moment of your life because life changes quickly. This is already a positive event and I want everyone who reads this to know that we'll make it through this. The prayers on Tommy's behalf, generosity and helping hands will only help. Again, thank you from the Hasletons.

Tommy's 5th day at the Hospital.

2008-12-19T20:26:00.002-08:00

Tommy started Chemo yesterday, boy was that a scary experience! To watch them shoot toxins into my baby's bloodstream, that was painful to watch. They do what is called an IV push where they, using the port-a-cath to access the veins, they slowly push the chemotherapy into the catheter then they'll pull back to make sure they still have blood return, so they know there is good blood flow. The nurse is all gowned up and has thick purple gloves on when she administers the chemo because it is so exremely toxic it could burn through your skin if it touched you. The scary part of that is they are putting that extremely toxic stuff right into my little boys veins-SCARY! Last night after the chemo, it was Tom's night to sleep here, we take turns to that one of us is getting some sleep every other night. He said that his pulse had dropped to 38bpm which is extremely low for a resting heart-rate even in a child. They had to hook him up and watch his heart for a couple hours last night.
Today he actually started feeling and acting a little more like himself. He hasn't gotten up, or walked since tuesday because it hurt his legs too much. Today we walked to the bathroom and wanted to stand a little more than normal which is a very good sign, it means that the chemo is working. The reason his legs hurt is because the leukemia cells are in the bone marrow, they were rapidly multiplying causing the marrow inside the bone to swell which would cause him pain. That is why for the last 2 months or so his legs have been hurting so much. If I would have only known it was leukemia and not growing pains, huh!
He is on a steroid called Dexamethasone, or Decadron which is a partner in killing the cancer cells and increases the effectivness of the other anti-cancer medicines. It's main side affects are increased appitite, weight gain, and fluid retention. Also it can cause irritability and mood/behavior changes, or what they like to call "ROID RAGE". Our friends have a little boy who is also going through this right now, they warned us about the "Mad Pills", but until you actually witness it you don't really understand. One minute he's fine and the next he is screaming at you for something so insignificant. It can be really funny or it can be exremely frustrating. He was playing Lego Star Wars today with Tom, and he was yelling at him the whole time! Tommy had Tom in tears from laughing so hard. Then he can go from yelling into crying, his hormones are so out of whack!
Tommy has had so many visitors and today was really the first day he was able to interact a little with his friends. He was a little mean Ashton, I'm sorry, it was the "roids" talking not Tommy. He really likes seeing people so if you feel 100% healthy we would love to see you. He wants to tell everyone thank you for all the wonderful gifts you have brought him.
Tonight was one of the scariest things, if not the scariest thing I have ever experienced in my life. Tommy had fallen asleep about 7:30 and was in a very deep sleep, also sedated on Morhine and Benadryl for the itching it causes. Tom and my brother Brian had just gone home and I was sitting down to write in my journal about 10ish. I was watching his heart rate because of what Tom had said happened the night before, I was a little peranoid about it. I watched his heart-rate drop from like 70's to 60's to 40's then to 38, and I was freaking out a little. I called the nurse and of course the CNA came in,, I respect her because I used to be one, but you are not a nurse. So she came in and checked his heart-rate with her stethascope because the pulse-ox was a little off all day. Then she called the nurse after me demanding her, the nurse came in to check it the same way and said it did sound low, but not quite that low about 60bpm. We decided to put on the little stickers that have wires, sorry forgot the name, to monitor it more closely. So while Tommy is in his deep sleep, I am trying to wake him up without making him mad. Tommy isn't the happiest person when you wake him up naturally, but with his "roid" medicine it is much worse! So I had woken him up, talking to him as nicely as I could and asked him if we could pull his shirt up to put stickers on him, and he screamed at me "NO!" So then the CNA was pulling his shirt up and he was getting more and more mad until he was crying and screaming. Then he started coughing, I was right by his face and he looked and me and was blue, his lips his whole face! He sat up trying to catch his breath and couldn't he was completely blue and was crashing. So I yelled to the nurse as he was turned around, "HELP ME! DO SOMETHING!" and he turned around and grabbed Tommy, shook him a little bit. Then he was still not breathing, the nurse and the CNA were in like panic-mode or something because I had to yell "Get the oxygen!" I owuld hav grabbed it but I was on the other side of the bed. They grabbed it put it on him and then there were a few more nurses and doctors in the room, I'm sure they heard me screaming. All the sudden I wasn't by him, I was freaking out thinking I'm going to lose my son right here, bawling I couldn't watch. They pushed the Code button so all the docotrs and nurses were in the room now, and now I am absolutely bawling ready to pass out. Finally he came to and wanted me because you can only imagine how scared he is to be surrounded by all these people and things. Right when he came to I wanted to pick him up and hold him forever, that was the longest minute of my life. They gave him an EKG to monitor the rythems of the heart to make sure it was funtioning properly. They found a little irregularity in his heartbeat but nothing serious. They brought it down to the cardiologist to look at and he said it looks fine.
I called Tom and told him to come right back up, so he brought my brother John up, Thanks Johnny, to help give him a blessing. It was a beautiful blessing and the spirit was very strong. I know that our Father in Heaven is watching him closely and is helping him through this.
I might be up all night watching his heart-rate because I am so freaked out now. It was quite an eventful day. Hopefully the rest of the night and tomorrow aren't quite as eventful! Please continue to keep Tommy in your thought and your prayers, he definately needs them! Thank you all again for all you have done for our family, thank you for your kind words of encouragement, keep them coming, we need those too!
We love our little Tommy with all of our hearts! He is seriouly "Tough as Nails" He is a fighter and he is going to win this battle! He is our HERO!

Pray for Tommy!

2008-12-18T22:06:00.000-08:00

Our little Tommy was diagnosed with Acute Lymphoblastic Leukemia on tuesday December 16, 2008. He is quite a fighter, and we know he will overcome this obstacle. He was sick on and off with croup for about 3 months, it just never quite went away. He would complain a lot about his legs hurting, which a lot of little kids complain of having "owees" a lot. We thought it was just growing pains, or maybe calcium deficiency. Then he was looking more and more pale, and the day before I brought him to the pediatrician we found random bruising on his body. So I took him to my wonderful pediatrician Dr. Strong, and we went to get his blook tested, later that day we were admitted to Primary Children's Medical Center and diagnosed with Cancer.
Tommy is seriously amazing, he is my HERO! I can't imagine being 4 years old and taking on something as HUGE as this, he has quite the battle ahead of him but we know he can do it! He was so excited to go to the hospital, he couldn't wait to sleep there and have parties, he said. I think he may have misunderstood what it's all about up at the hospital, but that's alright we talked about all the fun things we would do at the hospital all the way there. He has been a trooper the whole time, and has been the nurses favorite patient because he's a little charmer.
So he had his central line put in 2 days ago and that is how he will recieve all of his meds, his Chemo, pain meds, they will draw blood through there too. It is a port that runs from his chest to his superior vena cava of his heart, so everything flows right into the bloodstream. The same surgery he had his first of many, unfortunately, lumbar puncures to check for leukemia in the spinal fluid. That came back negative, which is a hige blessing, otherwise they have to treat that another way too, and it is a lot worse. He also had a bone marrow biopsy to see how much the leukemia has spread. So he has been very sore from all of that.
Today he started his first treatment of Chemotherapy. The first month is supposed to be very intense for these little ones, they want to have him into remission after the first 29 days, if not before. Then he continues on with the treatments for 3 1/2 years. They have found that that is how long it takes to completely kill the leukemia in boys. So we are in this for the long hall, but I know that the Lord will and is blessing us. I wouldn't be able to go a day through this without the love of our savior Jesus Christ, that is my rock. I have great faith that the Lord will watch over Tommy and will make him well. For some reason Tommy needs this trial in his life, it is very hard to understand now with him being only 4, but someday we will understand and it will be worth it.
It breaks my heart to watch him go through this and there is absolutely nothing I can do but watch. If I could take this disease from him I would in a heartbeat! He is such a special boy. He has been in severe leg pain the past few days because the bone marrow is swelling with the leaukemia cells multiplying and that pushes against his bones. For the past few days he has pretty much been confined to his bed because it hurts to bad to move or stand. For my crazy, roudy 4 year old, it is heartbreaking to watch him like this. We have done a lot of puzzles, coloring, watched lots of movies, read lots of books, and played LOTS of lego star wars. Tom and I are gonna be pretty good at that game, I think.
Tomorrow is another day, I hope it is better than today. Today was really hard on him, I think he is starting to get a little down. He has had a lot of visitors from our family and lots of freinds. We are so grateful for all the visits, it brightens up his day. Please if you do come, especially if you are bringing your kids, everyone needs to be 100% healthy! Tommy's immune system is way down and with the Chemo will only get weaker in days and weeks to come, so please wait until everyone is totally healthy to visit. Trust me there will be plenty of time for visits!
Thank you all for your calls, we have had an overwhelming amount of Love and support, We appreciate it more than we can express. Thank you for you gifts, they are so thoughtful and Tommy is enjoying them he thinks it's already Christmas. Thank you for your prayers, there is nothing more important right now than prayer, it is ultimately what is going to get us through this battle. We love you and hope to see you all healthy soon!
Check back soon!